Thursday, December 31, 2015

Shutting down

I totally want to start off this post all serious and say "as we come to the close of a year..."

But it's not me. 

Because I am so fucking excited that this year is ending. 


This year has been hella hard. 

Too much pain, uncertainty, grieving, loss, and distress has plagued me, my family, both sets of parents.

Last week, the week of Christmas was hard. Christmas Day sucked. SUCKED. For us. 

There were presents and gifts and laughter. And overwhelming excitement and fatigue and lights and wrapping paper and bows. There was anger and frustration and crying and rage. 

There was an epiphany in that I realized my mother is slipping.

Not slipping like she slipped and broke her ass.

But that her mind is going. And her dementia is beyond either me, my brother, or my dad are willing to admit.

I have not seen her in nearly 8-1/2 years. Nathan was 10 months old; getting pregnant again wasn't even on my radar. It was July 2007 when she and my dad and my brother came up to visit.

And I know that I will not see her in the State of Washington again, where Randy and I have made our home since August 2001 (teachers almost always move in the summer). She was unable to come up during My Cancer Adventure. She was barely able to call....

Although I've thought about it off and on for a long time, for several years, today I do not yet have the strength and courage to take my children to Tucson. Neither on an airplane, nor on a road trip. Because I'm just not there. I'm not sure I will ever be able to. And there are a myriad of reasons; but really, I don't want to get in the truck with these two lovely, intense, crazy-making boys and drive down to Tucson; all 1,685 miles of it. Not now. Airplane? No. I'm always concerned we'd be the ones that they make an emergency stop for in Vegas. Because that's exactly where you wanna get tossed off a plane with two boys. Right? Slot machines in the airport. Boobs flying down the highway. Sweet Jesus...I can't even imagine. Thankful we left that city behind a long time ago... ( a galaxy far, far gotta say that, duh!).

Anyway, the key reason right now is that I am still recovering from the hell called "treatment" my body went through this year. Chemo. Radiation. The side effects. No energy. Feeling like I was 12 feet underwater, wondering when I would surface for a coveted breath of fresh air.

I feel like I'm just starting to be able to breathe on my own. I'm able to cook again, but my timing is a little off. I'm able to vacuum, kinda. I'm able to take my kids sledding at Christine's house. And that's a huge accomplishment in an of itself! Four boys--holy schmoley! Crazy. Town.

But my mom.....

My mother called me one time during My Cancer Adventure.


And I had to schedule it as if it were an appointment.

It's incredibly painful. Like a knife in my heart. Oh--and the good news--I found out on Tuesday that my heart is normal! Like a setting on the washing machine. N.O.R.M.A.L. One less thing to worry about. One more thing to be thankful for. 

My mother has a very difficult time dealing with hardship. And on a certain level I get it. It would be much easier to bury your head in the sand than it would be to face yourself in the mirror, look yourself in the eye, and take your terminal illness by the balls and twist.

That's what I did this year. The differences between my mother and me was solidified on Christmas Day. For me, it's not divine intervention; it's just that sometimes, shit works out that way. I called and left a message, and she returned my call the next day. There's always been a weird hierarchy in my family where I have to call on holidays. Awkwardness. As though I have to call upon my parents in a formal way; because she prefers it that way. The Queen Mum. Mmmm....frustration.

They went to Phoenix to see my little brother, but nobody communicated that to me (typical). I didn't think they were dead by the side of the road; but I did think that, since I've not spoken to my mother since before my birthday on Nov. 19, that I've once again failed to live up to her standards.

My entire life, I felt like I've been jumping around like a three-year-old at a birthday party, trying to get her attention.

She didn't call me on my birthday. She texted. I know I shouldn't complain, my mother is alive; but still, it hurts. I called my folks on Thanksgiving, and they didn't call me back. She rarely does. My dad--he probably didn't know that I called; she probably forgot to tell him. But she says she never knows when it's a good time to call. Lame. Lame. LAME EXCUSE.

Hurt. Anger. Frustration. Mourning a relationship that I always coveted but never came. Frustrated that she's only 66 years old and is slipping. Does that mean I only have 23 more years till my own mind starts to go...? The brain is like a muscle. So I'm doing my best to keep it active.

Something happened to my mother--many things happened to her--and the result is a complete shutting down. Broken relationships. Broken family. Harboring anger...and hatred for things out of her control. With no way to let it go. Used to have hobbies, but let them go, too....

And last week her shut down caused me to shut down.

I'm done. For my own sanity. For the sanctity of my family. My husband. My children. For My Self.

I'm done trying to get her attention. From the conversation I had with my brother two days after Christmas, she has no comprehension of the depth of how serious my cancer was.

Every year, for both sets of parents, I have created a calendar with photographs of my kids, my husband, our dog, and me, so that they can see us. Totally egocentric, but they're parents and grandparents, it's an easy thing for me to do and the cost is economical. Take the high road, kid.

And this year, I made the calendar with a lot of photographs that include cancer, and the people that supported me as an individual. And supported us as a family.

It was hard. Going back and looking at myself with no eyebrows, no eyelashes, no hair. 

And I recognized June 13th in a special way, which is the day Randy's Father died.

And I recognized the day of my cancer diagnosis (March 9, two days before my husband's birthday). And the last day of chemo (Sept 21). And the last day of radiation (Nov 19; as said before my birthday; and, again, sometimes shit just works out that way).

And I recognized the dates I always do: my birthday, Randy's birthday, our wedding anniversary, and the boys' birthdays.

But I get it, Mom. I get that having a kid with an illness that cannot be controlled is fucking excruciating. Because I deal with it everyday. Every fucking day, I get it.

But guess what?

You gotta keep moving forward. 

This year was by far the hardest year I've ever lived through. But I did it. With the help of my husband, who lets me sleep when I need to, who is an awesome father to our two Beautiful Boys. When one of them (usually Nathan) wakes in the night, it is Randy who gets up with him, helps him, gets himself a blanket, and lays on their bedroom floor until Nathan falls back to sleep; shushing him so that he doesn't wake up his brother, who is a fairly light sleeper. If they're sick, it falls to me. But Randy is the Night Parent; I am the Day Parent. Randy was the one who was with me when I got my diagnosis, waited during surgery, during the first oncology appointments with the medical oncologist and the radiation oncologist. He is the rock of all rocks.

He's actually a Math Prof Rock Star.

Randy is the one that puts up with my crazy. My tears. My frustration. My anger.

My laughter. My tears. My joy. My celebrations.

I survived cancer because of him and his support.

I survived cancer because of Nathan and Isaac. Because when you're staring a terminal illness in the face, and on the one hand you know that you're going to survive...but on the other hand, you wish life could be have to have the courage to look your child in the eye and say, "I'll be ok. I'm trying my best" and knowing deep down from the depths of your soul that you honestly are.

I survived cancer because my tribe of women--and their husbands, and children--supported me and my husband and my children. Providing care, meals, support, love, an ear, a shoulder. Sharing tears. And laughter. And time. And dancing. The biggest gift was the time these amazing women spent on me and for me. I am forever thankful. I am loved. I am loved by a group of mothers that fill me up in a way that my own mother did when I was young and she was brave.

Taking my kids on the day of my surgery. Feeding them, entertaining them, educating them. Helping them feel safe. Helping them feel supported. Going with me to Seattle for genetic counseling and testing. Shaving my head at my house. Taking pictures. Going with me to chemo--I never went to treatment alone. The balloons and cupcake on my birthday and the last day of radiation.

I survived cancer because when I was younger, my parents taught me how to be courageous. So, I'm not taking away her experience of having a child with a serious illness...and I know she tried her best...I am choosing to close this year out knowing that in order to survive, I need to keep moving forward.

I am looking forward to hearing my husband's voice again. I am looking forward to the growth my children with go through in 2016. I am looking forward to helping my mother-in-law. My friends. My parents. I wonder if my brother and his girlfriend will get married. I am looking forward to making more quilts. To coloring. To writing. To helping myself feel healthier. To saying no when I need to. To resting and recovering from treatment. To being my own friend.

Because while 2016 may be challenging and I have some anxiety about what will happen with my mother and her memory loss, I will look back upon 2015 as the year that I gained more strength. More compassion. More love.

Not for her, necessarily.

But for myself.

For my husband.

For my children.

For my family.

So thank you, 2015, for coming to a close. For shutting down.

Because I know that my family is ready to move forward. We are strong. We are thankful for living in this amazingly supportive community.

We have faith in each other, hope for tomorrow, peace in our hearts, and love surrounds us.

With gratitude.

Rachel Doak Anderson
December 31, 2015 
faith, hope, peace, love 

Wednesday, December 23, 2015

We went to the movies!

On Monday, we took the boys to the movies for the first time ever. We saw Star Wars: The Force Awakens.

They both did really well and we're proud of both of them for making it through the entire show, including the 4 trailers, without taking a break. 

Isaac sat on my right. Nathan sat on my left. Randy was on Nathan's left. We flanked him to make it easier on everyone, including the other movie-goers.

We bought the biggest bucket of popcorn, and the smallest lemonade. May as well go all out!

We packed Nathan's backpack with his weighted blanket, Pink Kitty, and headphones. Nobody stopped us to inquire about its contents. He also had his iPod to help him get through the lines. 

We got a booster seat for Isaac, but he decided he didn't want it. When the scroll started at the beginning, I leaned into him and started reading it to him. I was sucking on a peppermint candy cane because I didn't want to have stinky breath. Isaac is the type of person who will tell you if you have stinky breath. He gets that from me. If you have a booger in your nose or something stuck in your teeth, I'll let you know. 

So I start reading and he politely whispered, "Mom, will you please stop?" I was surprised. And I whispered, "You don't want me to read it to you?" And he shook his head no. Ok, little dude, no problem. 

There were a few times during the movie that Nathan started to get overwhelmed, but he held it together. He ate most of the popcorn, but spilled some on the floor, which was a potential for a meltdown, but he didn't.

He waved his hands above his head during the end because he was excited. But he put his hands down when we whispered that we need to respect the people behind us. He leaned forward and waved to his brother a couple of times, which was really sweet and made me smile. He did bounce a few times in his seat, which is difficult for me to not do, so I get it. There were separate times that Randy and I each asked Nathan if he needed to take a break; he said no. He leaned forward and let me gently rub big circles on his back, and it helped calm him.

After he accidentally spilled his popcorn, he chewed on Pink Kitty's tail so much that her entire tail, as well as her rear end, were soaked by the end of the movie. But Pink Kitty's job is to provide comfort. He's had her since he was 3 months old and she is very loved. And she's very well made; been through the washing machine several times; and with all the chewing he does, I've only mended the tip of her tail once. But after this experience, she needs to be mended again. And that's totally ok.

Here we see Pink Kitty, who does her job amazingly well.

After the movie, we had a challenging time getting Nathan out of the building because he saw the video games and made a beeline towards them. After Isaac and I hit the bathroom, I sent Randy and Isaac out to bring the truck to the front door, and took Nathan into the bathroom. Fortunately, the ladies room was empty, we got in and out, and then left the building.

We talked about the movie, and Nathan said he liked it but "there was too much dying." Isaac loved the entire experience. Like his father, he takes his movies very seriously.

The only thing Randy and I didn't anticipate was how Nathan would be on Tuesday, the day after. It was pretty rough. Nathan had a lot, and I mean a LOT, of seizures. So much so that, in hindsight, I should've given him an extra dose of his medication to help him out. But I was so fried from watching the movie twice and sitting for 5 hours that I didn't think of it until he was asleep last night. I feel badly; but he's doing better today.

So the lesson is that he can go to the movies, but the next day will likely need to be a lay-low day. And that's totally fine with me. I am thankful that we, as a family, had a milestone in that we went to the movies. I am also thankful that I learned what to do to better help my kiddo with special needs.

Sunday, December 20, 2015

Let's Go to the Movies

Nathan is 9. 

Isaac is 6-1/2. 

They've never been to the movies. 

They've seen plenty of movies at home and are able to make it through an entire 90-minute show without screaming "pause it! I gotta pee!" And in our home that's some pretty significant progress. 

We drive by the one movie theater our town has every time we go into town. We also pass it every time we go home. There's no way around it. 

Well, there is, but you'd have to go out to the West End of the Peninsula, to Forks, where the glittery vampires are. (Note: glittery vampires are not the same as the REAL vampires!) And then south all the way to Aberdeen, where Kurt Cobain is from. Then east to Olympia, north towards Tacoma, across the Tacoma Narrows Bridge, and then across the Hood Canal Bridge (the third longest floating bridge), through Discovery Bay and Sequim, and then we'd be home. Or we could head up the Hood Canal from Olympia, but 101 is really twisty and curvy and induces nausea. Seriously. But either way, that drive would take like 8 hours. And ain't nobody got time for that. 

So we drive by the movie theater.

The boys can read the marquee. They know Minions was playing this past summer; they'd yell "MINIONS!" every time we drove by and they saw it on the marquee. They know The Peanuts Movie was there. They know The Good Dinosaur was recently playing. 

They know Star Wars: The Force Awakens opened on December 18th. 

It says so on the marquee. But also, were their parents so there are certain things they're just gonna know. 

Nathan and Isaac do not know about going the movies. But tomorrow is the day.

They do not know that you've got to spend money for your ticket. Or that your ticket gets you in the door. 

They do not know that the smell of popcorn when you first walk in. Or that movie theater popcorn is as addictive as crack cocaine. And has more calories than a Big Mac (540 calories). Of course, they don't know what a Big Mac is. And really, even though a serving size of popcorn, nobody eats only one cup of popcorn.

(Why doesn't the Fed classify movie theater popcorn as a Schedule I substance? That shit is way more harmful than marijuana!)

The boys do not know that the size of the screen. Or the auditorium. Or that the lights go down. Or that you get to have an experience with other people watching, laughing, and having the same emotions as you, at the same time. 

They do not know that they will be able to hear and feel the sound coming from the speakers. They know absolutely nothing about surround sound. 

They do not know that you need to sit still in your bouncy seat. Or how important it is to be quiet. 

We've been talking about it with them, of course, to try and prepare them for the experience. We'll pack Nathan's backpack with sensory gear: his weighted blanket, his pink kitty that he's had since he was 3 months old so that he can chew on her tail in case he has anxiety, and both boys will have their noise reducing headphones. I'll slip some earplugs in my pockets, too, just in case they need them. Or I need them. It's been a long time since I've been to the movies. 

And Randy and I are going tonight. We need to preview it for them! And we need a break. Because really, we don't want to risk our Star Wars Experience. We don't want this movie to be ruined by two little trolls who will ask questions, bounce around, get up to pee, and I know all this is normal, but seriously, I need a break from you people. 

Some people call this being selfish. And those people are wrong. It's called "self care" or "self nurturing." We are taking care of ourselves by going. It's gonna cost more money; but it's totally worth it to me and Randy. 

So one of our awesome sitters is coming over. He's home on break from college. We're pretty particular on who we leave our kids with; our sitters have to be Nathan proof. You can't leave an epileptic & autistic child with just anyone! And this sitter has been with us for like 4 years. He is fantastic; he gets my kids; and my kids absolutely love him. We are so thankful for him.

We were hoping to take the boys to see a Level One movie, like The Peanuts Movie or The Good Dinosaur before seeing The Force Awakens, because it's a good idea to do a test run and make sure they can get through a 90-minute show first. 

I know Star Wars: The Force Awakens is 2 hours and 16 minutes.

That's a long movie. 

However, all the Level One Movies are gone. We do not have a theater where you can go see an "older" show for less money. 

We checked the times on The Good Dinosaur, and the 2D version starts at 5 pm. Most families would just suck it up and go. But not us. Nathan needs his anti-seizure medication at a specific time, and we simply don't do stuff in the early evening if it's gonna interfere with dosing medications. 

We could go to the 3D version, but the glasses would likely become a weapon for my two. It's how boys roll. When you're born with a penis, you just naturally shoot things. It's like having a gun on your person at all times. And how many times to boy parents say something like "make sure you aim it in the toilet!"? I can tell you it's a LOT. Seriously. 

Anyway, so tomorrow, we're having a first for the Anderson Family Circus: we're going to the movies as a family. 

Here's hoping everyone pees before the movie starts, and that we can make it through the entire show without having a meltdown because of the sensory overload!

Thursday, December 17, 2015

It fell off

My Zio patch fell off.

No, really. 

Was supposed to be on for 2 weeks.

It was put on my body on Thursday December 10 at 2:00 pm. 

On Friday morning at 6:30 I called the 24-hour Zio patch support line and the very helpful man told me what to do to try to get it to stick back on. So I followed his directions, and it stuck for a little bit.

But it fell off on Friday night/Saturday morning. It lasted less than 48 hours. It may have lasted 36 hours.

I called the 24-hour Zio patch support line Saturday morning at 7:30, and the very helpful lady said to mail it in. She asked if, when it fell off, I was doing anything that would result in me sweating excessively, because sometimes they fall off early if a person is sweating a lot because they are exercising a lot.

I told her I was sleeping, and we both chuckled a bit.

We said we we're both going to call my doc's office as well as the hospital on Monday morning and let them know. 

Because this is exactly what I need to deal with. 

Just one more thing...right?

I called my doc's office, and they are trying to find out answers so they can give me direction of what to do. 

When I called the hospital, the schedulers said "well as long as it's was on for 8 hours, they can get a pattern." 

Really? Then why in the world do doctors order people wear this freaking thing for 2 weeks? 

Right now, I don't know if I'll have another one put on.

I'm waiting for the Zio Patch doctors to generate a report, send it to my physician, and then find out what is going on with my heart.

But, I know that the Zio Patch arrived in California because the pre-addressed, postage paid box they provided also had a tracking number on it and I tracked that shit.

Hopefully, they'll have enough data to generate a report.

Monday, December 14, 2015

Brillian description

I was recently comparing notes with a friend who's son is also on the spectrum. Her son has what we call "intestinal issues"--he holds his poop because he's deeply afraid the poop will rip his anus when it comes out. 

Not that he said it quite like that. 

But I get it. Sometimes it really hurts to poop. 

His mom, who is my friend, gives him Miralax every day. But sometimes is moms get busy, and we forget to make the poop juice in the morning. It's not like we get busy or anything....

She's a good mom. A damn good mom. And she's trying to help him poop.

The brilliance comes in her description of what she's trying to do with him:

"'s like coaching a woman through labor...except it's a woman who's entirely unappreciative and insulting."

She nailed it.

And my hope is that he, as well as other people living on the autism spectrum, learn to work through their fears and anxieties.

*My friend gave me permission to quote her. 

Friday, December 11, 2015

Just One More Thing

Just one more thing.


So on Thursday (yesterday) I went to the hospital's cardiac services division and got a Zio Patch put on by a nurse.

The tech is pretty cool. It's "a small adhesive wireless device worn on the chest for up to two weeks...[and is used] in detecting abnormal and potentially dangerous heart rhythms."

Please note that that's not me in the picture. My boobs are bigger. Also I'm a lady. Obviously.  

The doctor at my primary care office did an EKG and I have an abnormal heart rhythm.


Because I need just one more thing to deal with!


The question is, was I born with this condition and it decided to present itself now, at the age of 43, with more stress than it a result of chemotherapy...??

Hopefully the test results will provide the information necessary.
So the nurse put this patch on me and I wear it for two weeks. I get to take it off on Christmas Eve. Clearly divine intervention.

Then I put the patch in a box they provided. It's addressed and the postage is paid. Which it better be since I agreed to pay the $371.81 if my insurance doesn't cover it, which they said they would, but the hospital makes everyone sign that. No pressure.

It gets mailed down to California. The company will download the data and then a cardiologist will read the results, which will be sent to my primary care doc and my chemo doc. I'll find out the results on January 11 from my primary care doc; the doc that caught my kids when they were born...and the same man who told me I had cancer on March 9, 2015. Whatever the results show, I need to hear it from him.

As an added bonus, anytime I feel my heart racing, I get to push the rather large button that is in the middle of the device, AND I write in the little booklet they gave me so that I can write down the date, time, feeling (pounding, fluttering, anxiety, stress, etc.) and the activity I was engaging in at the time.

Because you can stop whateverthefuck you're doing in the middle of doing it and write that shit down. 

Especially if I'm doing something like helping Nathan in the bathtub. 

There are 13 opportunities for me to log my data.

Thirteen. Who in the goddamn decided on 13?

You couldn't put an extra page in the booklet and give me 14? Or 15?

Not that I'm super superstitious. But, really, Stevie Wonder was on to something there.

It's already stressful enough to wear this thing for two weeks! You couldn't throw us cardiac patients a bone and even save a bit of money and do 12 pages of entries?

Just one more thing.

I didn't sleep for shit last night because I have a six-inch long, hard plastic, protruding sticker on my chest. With small pointy things going into me. Not cool.

What did the nurse say about when it flashes orange? Where's my booklet? Should I read it now? I don't want to wake Randy up; he's a light sleeper. Should I call? The nurse said the support staff at the company that makes the Zio Patch are available 24 hours a day. Should I call?

Try to sleep. On my left. On my right. On my back. Get up to pee. Again. And again. And again. Fuck it. I'm a stomach sleeper. I'm gonna give it a try.

I slept about 4 hours. I took a nap this morning. I'll take another nap this afternoon. And I'll likely go to bed not too long after the boys do at 7:30.

I'm also fighting my first post-cancer cold.

But it's just one more thing.

Tuesday, December 8, 2015

Got us out

I know you tried your best.

You were young, in your early twenties, an art major. I sure it was exciting to fly from Cincinnati to Philadelphia, unbeknownst to your parents, to sneak home on a weekend and see him. 

You never told me the details, but I know you never finished college, you got married, and your parents were beyond angry. 

You told me they disowned you; whatever that means. It never quite made sense because it's illegal to own another person.

He was an orphan at the age of 10. His father wasn't in the picture; his mother died of a "female cancer" at a young age; it was never discussed back then. He lived with an aunt and uncle. He became an electrician.

At some point he became active addict; his drug of choice was alcohol. I know he also used marijuana. And probably a myriad of other substances; it was the seventies, after all.

He became verbally and emotionally abusive to you. Eventually it turned physical.

My first memory is of you hobbling down a flight of stairs with a full leg cast. I was watching Sesame Street and remember feeling badly for you in your struggle.

It was never clear to me if the abuse started before, during, or after your pregnancy. But it doesn't matter. You took me and you left. And in 1976, when I was only 3, that was a really difficult thing for a woman to do.

But you got us out.

And for that, I thank you.

Friday, December 4, 2015

Thanksgiving in Our Autism Home

Thanksgiving is different for us in that there's a major--and I mean MAJOR--change of routine. And when you live life on the spectrum, routine is vital.

Normally in Our Autism Home, Isaac is at school and Dad is at work FIVE days a week. Last week they were only there THREE. 

Which could also be said that Isaac and Dad are normally only home TWO days a week and not FOUR. 

Then there's the fact that for whatever reason, I feel compelled to cook a huge meal, over the course of three days. Which is a cool idea if you don't have a kid with Sensory Processing Disorder. It's part of who Nathan is.

We all have SPD to a certain extent. I've been known to unlace my 8-hole Doc Marten's, change my socks because the nubby on the seam near my toe is making me crazy.

But the smells, the textures of the foods, the fluctuations in temperature in the house because of the oven being on and off, combined with the fact that we had below freezing temperatures for a week as a high (very uncommon in November) and the sun being out and being super bright and shining off the ice equals major sensory overload for him. 

And for me. 

Last week was rough. 

We were coming down from Mom being done with radiation. 

We're shifting into Mommy in recovery mode. And I'm still doing the saline soaks 2-4 times a day. I'll be doing those for another week or two. 

We had Daddy in Seattle last Sunday for a Monday morning appointment to see the ENT who specializes in voice issues. (Good news--it's treatable! But that's a post for another time!) 

And we had Thanksgiving weekend, which is stressful for probably 99% of Americans. 

We had our first Thanksgiving without Randy's Dad. We were able to FaceTime with Mom, and supported her the best that we could. 

It was a shit ton of stress. 

There was fighting. And yelling. And crying. And not enough sleep. 

And they whined that they didn't play Wii enough. When we all know they did play Wii enough. 

And they hardly ate the food I made. But they ate the best they could. Because really, You Have to Fucking Eat. 

And they got to learn about privileges. But they don't quite get it. Wii is a privilege. Food is a right. 

Being a pain in my ass about food is not a right or a privilege. It's being a pain in the ass. 

So we had a family meeting. I took notes (lookout, bitches!). They're working towards earning the privilege of going to watch a movie at the theater. Because they've never been. 

For reals. 

And the theater is 2 miles from our house. We cannot really go anywhere without driving past it. They do not know what is inside. 
But as much as Thanksgiving weekend absolutely sucked for us, it is over. It took us two days to recover. It took us three days to move forward from it.

This week has been better. 

On Monday, Isaac received a Student of the Month Award for all of his hard work at school. On his certificate, his teacher Mrs. L said, "Isaac is a mathematician wizard! He has passed many levels in his math timings this month. Way to go Isaac!" I am so thankful that Mrs. L gets my kid. That she supports him and meets him where he's at.

He earned it.

Randy, Nathan and I were able to attend the assembly and watched Isaac receive his award. We are all so excited for him! Because it felt like we all received an award for making it through and surviving Thanksgiving Weekend 2015. 

On Thursday, Nathan received a purple stripe on his belt at Hapkido. He is 9, and so the requirement that Mrs. V has of any kids older than 9 is that in order for them to level up to the next belt, they are to know an adult technique. Nathan's been working on "sticks" which is also known as Doce Pares.  

My kid can do that! My kid who has autism, epilepsy, sensory processing disorder, and ADHD can do stick work. But I haven't seen him. When I sit on the side, while he's in class, he has challenges focusing. But I know he would not receive the purple stripe had he not earned it. 

He earned it.

So, Thanksgiving 2015, I bid you goodbye. I am thankful you are gone. I am thankful we are moving forward as a family. 

Wednesday, November 25, 2015


Thanks to the boys playing Angry Birds since a young age, we live with Levels.

This works really well for us because we're a family living with autism. Life can be complex for anyone, but when you're dealing with autism and epilepsy and cancer, living with Levels helps keep life a little bit simplified. 

Nathan has two Levels of medication everyday; once in the morning and once before bed for seizure control. For the most part the meds help, but he still has 20-40 seizures throughout the day, lasting from 1-3 seconds each. It depends on his Activity Level, the day before and how much sleep he's had, or if he's sick, how much screen time he's had, how much school work he's done. And when the Holiday Level hits, look out, because he seizes a LOT. If he doesn't sleep well, or is sick, the number of seizures he has during the day increases.  

Levels work with food, too. Sometimes Nathan eats Two Levels of breakfast, a couple hours apart. Isaac frequently has Two Levels of pasta or pizza or goldfish crackers. Fortunately I can negotiate a Level of Protein and/or a Level of Fruit or Veggies in between Levels of Carbs. 

Seriously. This is how we roll. Oh and when you reach The Boss Level, it means you're at the Highest Level. Or that you have a full tummy.

When I was going through my first round of chemo, Nathan dubbed it Level One Chemo. I'd go to the Cancer Center on Monday morning at 7:30 for labs. At 8:30, I saw my doc, and if my labs were ok, she'd approve me for treatment, which usually started at 9:30. I was given a two-drug combination that was delivered into my port, and by Wednesday morning, the medication knocked me flat on my back, confining me to my bed for two to three days.

I was was religious about taking my prescription anti-nausea meds, and taking the RSO medical marijuana capsules that Nurse Wendy made for me; I was so happy that I never puked. But a couple days after treatment, my Energy Level was Zero. I was exhausted all the time. Fortunately I only had four doses of Level One Chemo, and went every other week over the course of 8 weeks.

Level Two Chemo was a different medication and was delivered the same way as as Level One Chemo, a liquid that went into my port, and through the port directly into my heart. I started Level Two Chemo the last week in June, and was supposed to get 12 doses, once a week for 12 weeks. 

Seemed easy enough. 

But that didn't happen. After my third dose, I started having what the medical community calls "urgency issues" which translates to "sudden feeling that if I didn't get to the nearest toilet, I was gonna shit my pants!" It was about this time my friend Carrie and I stopped walking on the Waterfront Trail on Saturday mornings; and that was hard for me.

I had a total of 6 treatments of Level Two Chemo before winding up in the ER on a Saturday night with a severe case of chemotherapy induced colitis. Yes, the ER Level is a Really Serious Level. Fortunately, the boys have each been to the ER, so they know it's the A.F.A. Level--the Ain't Fooling Around Level. 

Apparently chemo induced colitis is a side effect that is very rare, so of course I developed it. It basically felt like I was giving birth out of my ass. At one point, as I was doubled over on the toilet, I told my husband I'd rather give birth again. But then we'd have another baby; not happening.

The concern Randy and I had was that I had an intestinal blockage; but the X-Ray showed I was completely empty. I didn't feel like eating anything, and had no energy. All I could do was lay in bed and sleep. Oh and I could walk to the bathroom. And I could smoke a lot of marijuana, because it helped me sleep, and really helped my Anxiety Level low.

Level Three Chemo started when my medical oncologist and I agreed that the Level Two Chemo was not a good medication for me. She chose another drug, of which I'd receive two doses, three weeks apart. 

I had to do an experiment and was horrified to do so. The Level Two Chemo drug was called Taxol. The Level Three Chemo drug was called Taxotere, and was chemically similar to the Level Two Chemo drug. We discussed possible side effects, but here's the thing with chemo--the list of possible side effects is several pages long, and nobody knows how they're going to react to the drugs. Fucking cancer. The only thing for sure is you'll feel like shit a couple of days later.

You also know the other side effects you're gonna have for sure are anxiety and not sleeping the night before you go because you're so fucking scared you're gonna keep feeling like you're going to give birth out of your ass after they give you the new drug. 

My Anxiety Level was at an 11. 

The Boss Level. 

But you suck it up and you drive yourself to the Cancer Center and you take a few hits off your pen to calm your nerves, but only after you park your truck because the last goddamned thing you need is a ticket for DUI or even to get arrested for failing to follow the open container law, risking your family and your career. 

Do they give inmates chemo? I'm too cute to be in jail

And you start envisioning the headlines on the local paper of your small town: "College Health Professor arrested for Medical Marijuana DUI: claims she has breast cancer". And even though marijuana has been medically legal in Washington since 1998 and recreationally since 2013 (passed by us voters in Nov 2012), you still freak out a little bit because your a child of the 80's...where you had the Reagan Administration telling you to "Just Say No" and Nike telling you to "Just Do It"

Those two mass media campaigns are totally responsible for fucking up Gen-Xers. Seriously. Can you say "Mixed Messages"?

So, just like before when you did Chemo Levels One and Two, you toke up before you walk in for your Level Three Chemo because you gotta get through this shit. Fucking cancer. You have to crack the windows both for the smoke, and for the anxiety can escape. That energy has to go somewhere, because you're beyond the Boss Level. 

Taking medical marijuana helps you relax. Helps you maintain your sense of humor. Helps you feel like you can accept the toxin they are putting in you that you know is killing your cancer. 

As you sit there, knowing you'll be completely sober when you leave the Cancer Center four hours later, around 11:30 am, you wonder when the United States will get their shenanigans together, declassify the medication as a Schedule I Substance and let people have access. Because you know that it's not anywhere near the same as heroin and LSD. You feel intrinsically that you've been lied to by the Fed. By the D.A.R.E. program. By the textbooks that you studied in undergrad. You can't overdose on pot. You can overdose on heroin

And you're pissed that your Father-in-Law didn't get the same opportunity with medical marijuana that you have. Because he lived in Oklahoma, where if you have any--ANY--amount of pot on you, you're in jail for life. Period. No questions.  

And you get through the first dose of Level Three Chemo. And you wait for days, expecting to get knocked flat on your back, because that happened before and the two medications are so similar, chemically.

But it doesn't come. You passed the first part of Level Three Chemo.

And you go back three weeks later for the second dose of Level Three Chemo. And you wait for it to knock you on your ass again, even though your medical oncologist, with whom you've developed a good relationship, and you trust with your life, obviously, told you that if the first dose didn't give you colitis, the second dose won't. 

But, you're so fucking scared and strung out from living with cancer and your nerves are fried because of everything you've been through, you don't completely trust her when she tells you you'll be ok.

But you take it.

And you pass Level Three Chemo.

And you recognize that you just finished the game.

All Chemo Levels Complete.

You Saved the Princess. 

And you're thankful for being done with The Chemo Levels. 

Saturday, November 21, 2015

November 19, 2015

Wow. Thursday was amazing.

I am so thankful. And so fortunate. 

I am very loved. 

By a LOT of people! I mean--WOW! I am truly overwhelmed.

It was the type of day that will stand out for a long time. Like your wedding day. Or the days your children were born.

Unless you have like 15 kids, then you'd probably mix that shit up, right?

My day started at 5:05 am, when I heard and felt Randy get out of bed to go help Nathan. Fortunately Nathan got back to sleep, but was borderline-meltdown because his stomach was empty like a Sarlacc Pit when he got outta bed about 7, insistent that his brother play a round of Candy Land. Seriously, the kid could've eaten Boba Fett and still needed more food.

Isaac's got a lot going on, getting ready to leave the house by 7:25. But he stopped and played Candy Land, because that's the type of brother he is. And so did Randy, because that's the type of dad he is. There was just enough time before they left for school and work. Abby played too. But it's hard for her because she doesn't have opposable thumbs. Isaac won. No meltdown occurred. Gratitude. 

Nathan and I played Connect 4. Fine motor skills. Planning. Strategy. He's working on these pieces. Monopoly Jr. was next. Counting the number of correct spaces. Counting money. Adding. Subtracting. Basic reading. He's getting it. But lots of colors on both games can cause stress for him. We had a strong snack before leaving the house. Always have a strong snack before you go workout with Mrs. Ventura. Always.

We walked into the dojo for Hapkido, and when I opened the door, Meghan, Vanessa, and Emily greeted me with gusto! YES! Thank you ladies! As I was helping Nathan into his dobok, I breathed with you--and needed it. Gratitude.

I got to spend about 40 minutes talking to my Mom-in-law, Uncle Jerry & Granny. On the actual phone. Because, really, the only time I use the talkie part on my phone is for medical appointments. Right? It was fantastic to talk with them. I drove out to Ediz Hook and watched the waves roll in on the north side of the spit. It was grey in Port Angeles, and the sun was shining on Victoria, BC and it was beautiful. I stayed in my truck, where it was warm, just talking with them. Sometimes, you just gotta hear your Momma's voice, you know...?

I picked N up from Hapkido, where he lead the class in stretches for the first time! So proud of him! Thank you Mrs. V for the picture! This is what autism can look like. This helps me feel like we're all doing something right for Nathan; creating a supportive community for him.

We ran several errands after class. A year ago, I would even think about taking Nathan to one store, let alone 3, AFTER all the action at Hapkido, and AFTER playing board games. He impressed me. I knew I was pushing my luck though, and we headed home. He was starving again, and I didn't have any food that he was willing to eat.
He was starving and needed me to help him not have a meltdown. I parked him on the couch, with both of his weighted blankets--totaling about 25 lbs--and gave him the TV and Roku remotes. He watched mellow shows, as agreed upon--he was still pretty reasonable--but was super on edge. He expended an incredible amount of energy; I could feel him teetering on the edge of a very dark and very deep precipice. I knew he could go into meltdown mode if I didn't hurry and make something substantial for lunch. He ate a full plate of fried chicken nachos with avocado (not my tastebuds) and was pretty darn happy after that.

When Randy and Isaac came home, I was amazed when I's handed me a stack of cards--he told his teacher and classmates that it was my birthday AND last day of radiation. Mrs. L took time out of her day and her lesson plans and rolled with my kid and his excitement and they made cards for me! So honored. So thankful. Plain white printer paper folded in half make the best cards ever. The kids drew super heroes and lasers, hearts and flowers and rainbows. And the kid spelling--telling me I'm a sooper heero! Love it! Gratitude for Mrs. L and for the kids that are helping Isaac during our family Cancer Adventure. 

I left for my last radiation treatment, carrying a dozen cupcakes that Nathan and I made Wednesday. It was a homeschool project for us--reading the instructions that Betty Crocker kindly provided on the box. Measuring = math. Pouring = fine motor skills. Using the electric hand mixer AND moving the bowl around = using both sides of his brain simultaneously. Baking = chemistry. Using the oven properly = kitchen safety. He'll get there. He's not the Pokey Little Puppy. He's Leo the Late Bloomer. And it's ok.

I walked in the two sets of the sliding glass double doors and was totally surprised by what greeted me--a bouquet of balloons, a cupcake, and 2 cards! So thankful to Jen and Caitlin for stopping at the Cancer Center and dropping gifts for me. So thankful for Robin and Tess at the front desk and the birthday card. They were all thrilled with the cupcakes--because they have the type of job where people are not happy, and people are dealing with terminal illness, and energy levels can be quickly affected. I'm not sure they are thanked enough. So the cupcakes were my way of saying thank you for helping me. Rob, my favorite radiation tech, insisted on taking my picture. He said that in 20 years, I'll want to remember this point in time and that I needed a picture of me. I'm glad he insisted; I'm glad I listened. 

I stopped by to see Lynn the Radiation Oncology Nurse who also happens to be a Rock Star. I gave her a cupcake and gave her a hug. I thanked her for her dedication to her patients, and to me. We both got teary and promised to keep in touch.

I stopped by to see Florence--she was my Other Mother through My Cancer Adventure. My own mother was unable to come up; I get it...a flight from Tucson to Seattle, then a drive to Port Angeles is a big deal...and my folks are getting older. But Florence went to most of my chemo infusions with me, and brought fancy chocolate for after treatment was done. Twist my arm to eat chocolate! And, at her house on Thursday, she gave me some fancy chocolate, and a beautiful orchid in a vase. She's been a gardener for 40+ years and disclosed she's killed many orchids. I promised I would do my best to keep it alive. Typically I have a black thumb of death.

A quick drive back to Port Angeles because I also got to go to acupuncture; this has been an important piece of my cancer care. Pat has been fantastically supportive and explained every thing she did when she was inserting needles. For the most part, I don't feel the needles when they go in. Sometimes I do, but it's like a pinch and then it's gone. Ain't no big thing. Then I rested for 40 minutes--it was much needed. I did't go last week to acupuncture because Pat was sick; as a health care provider, she doesn't want to expose others--and for that I am so thankful. But last week was rough; and I'm thankful it's over.

And then I brought home Chinese food and used a gift certificate we were given--thank you whoever gave that to us back in the summer. I appreciate the birthday dinner! The leftovers fed us grown-ups again Friday night. Nathan had fried chicken nachos; I's ate pasta. I'm a short order cook a lot. But it's important for the Routine. Whatever, just eat, bitches. 

I also spoke with my folks Thursday night. I worry about them more than they know. Mostly I worry about Mom (mostly....) And while it was good to hear their voices, I know that I'm going to have to talk with my Dad at some point. Although I've not seen my folks in over 8 years, I can tell my Mom is starting to show signs of slipping. My Dad is planning to retire in about 6 months when he turns 65. He's been talking about retiring for the past three years, so we'll see what happens in May. He's probably already aware of Mom's mental health status; but we still gotta talk. It's not going to be easy; and I'll do it when I'm ready, when I'm feeling stronger. I'm the oldest; I'm the Health Educator and it's a major health issue; I discuss this topic with my students, and so it falls to me

I texted with my brother yesterday, too. I am thankful for him. He sent a card and a Wonder Woman magnet and told me about the gift certificate at Michael's. Randy and I are going there on tonight for dinner. We need a break and an evening out.

After Chinese food, Rand and the boys sang "Happy Birthday" and I blew out the candle on my cupcake. We each had 1/2 a cupcake, because nobody needs that much sugar before bed. Even though we ate late, the boys were still in bed asleep at their normal time: 7:30 pm. 

It's hard to pick a favorite thing about Thursday November 19, 2015, the day I turned 43 and am considered young according to my oncology team. The sun was out most of the day--that was a huge bonus! But a favorite--I'm not sure I have one. I'm quite pleased with myself in that I averted TWO meltdowns with Nathan. But really, I am thankful for the entire day: for the love and support of my husband and my children; for my friends who I've chosen to be my family; and for walking out of the Cancer Center as a Breast Cancer Survivor.